19 August 2001
As we sat on a blanket facing a gray haired woman with a plait down her back and a cowboy hat who played kid songs on her guitar and invited children to "shake shake shake" their tambourines, I watched a girl sitting nearby. She was at least six, maybe even eight years old. Gawky, but a pretty face. She wore a cornflower blue sundress. She looked well cared for. She looked autistic. Her body swayed but not in time to the music. She tilted sideways, precarious. Off balance inside and out. She seemed only partly aware of the people around her. In the middle of a song, she suddenly stood up and gazed up at the empty blue sky. Her father prompted her to sit on his lap. She didn’t seem to hear him.
I felt a little ill. Sad for the girl, who is getting old for intervention to do much for her. Annoyed at her father, who sat peaceably by as she stimmed and checked out, as if to say "this is normal, why should I get involved?" But also scared for Damian. Not that he’ll end up as badly off as that child. He’d have to dramatically regress and that’s as likely as a swan turning into a tadpole. But seeing her underlined something I don’t like to think about: this doesn’t always work. Children don’t always get better.
A few minutes later, the Floor Time coordinator introduced me to a woman nearby on the blanket, saying "Natalie, Tamar’s son is going to the same school your daughter is about to start." So we talked, Natalie and I. At great length. I found a kindred spirit in her, someone who is determined to get as many services for her child as she needs, to dive into Floor Time and help her daughter in every way she can. A smart woman who has made a point of educating herself (you'd be surprised how many don't). Her daughter is nearly two and a half and has already been getting therapy for four months. They caught on faster than we did, but then again, that little girl didn’t speak at all by age two. Damian did, just not communicatively.
I watched her daughter, there on the blanket. She seemed to have reasonably good eye contact. She was fascinated by the guitarist. She smiled and laughed. A joyous child. Nothing here to feed into my anxiety, right? But as I talked about progress and hopes, Natalie said, "But how far can they progress? Will they recover completely? Is that possible? There’s just no way to know."
And there isn’t. High functioning autistic adults may be able to hold down a steady job, may be able to feed and clothe themselves, but can they make friends? Can they fall in love? Will they be socially accepted or will they be pariahs because they don’t understand the subtle signals we read without thought?
Will Damian go all the way?
I talked to the head of the clinic about it a little later. She was talking about the Washington DC conference Dr. Greenspan gives every spring. I said how very sensible I thought Floor Time was. I wondered aloud what teenagers and adults are like who have been in the program from toddlerhood. I wondered, in other words, if they’re fully recovered.
She said there was a seminar on that very thing this past April.
And?
The answer wasn’t quite what I wanted to hear. A very few children can indeed grow up to become completely socially normal. Normal is of course a fraught word, but in this context it means comfortable in society, not isolated. Feeling connected. Most autistic children don’t get this far. They may be able to go to a regular school, to mainstream and do well academically (though this is not a problem of intelligence), but they don’t make friends easily. They walk through life feeling (and acting) "other."
Do I have to say it? I want Damian to be one of the few. I think he can be. He’s got a huge capacity for joy and connects so well with us these days, as well as to his myriad therapists. The clinic head was reassuring. She spoke of peeking in on Damian’s Friday clinic session with Beta. Said they were both laughing and animated. Said if he can do that now, he has a very good shot.
But a good shot isn’t enough. I want a guarantee but there's no such thing, damn it all.
Last night when I should have already been asleep, I peeked in on an autism board. One woman wrote to this effect (I’m paraphrasing): "I read all these milestones achieved and I feel sad; my seven year old son seems to have hit a plateau. Tell me I’m not the only one!" Several parents responded, they all felt the same. One said the plateaus get longer as the child gets older. That gave me chills. I don’t want plateaus. I want progress. Constant, fast progress. I want a reassurance that my little guy will go all the way. His window of real opportunity is small: the brain loses some of its plasticity, its capacity for growth, around age five or so. We need to keep pushing ahead, helping him change and grow and expand and goddamn it, go all the way to a happy, complete life.
Last night I felt anxious. I wondered if he could totally recover. If my conviction that he would was just a gossamer web, no more substantial than a dream.
Then morning came.
Three conversations this morning:
Damian and I are lying on his bed. He came into our bedroom in the middle of the night and slept restlessly beside me. Every time I moved away, he rolled toward me like a homing beacon seeking warmth and comfort. When he woke up, he went running down the hall to his room in search of Daddy, who had sensibly retreated to the solitude of Damian’s bed.
Now we lie on Damian’s bed, wide awake (Damian) and half-awake (me). I ask Damian, "Did you have a good night’s sleep?" Damian says "yes," as he nearly always does these days, even when he doesn’t mean it. I persisted, "Who did you sleep with?" Damian replied without hesitation: "Mommy!"
On the surface, a simple chat, nothing so unusual about that. But what’s unusual in this house -- or, I should say, what was unusual until very recently -- is the back-and-forth ease of the conversation. He’s not asking for something. I’m not modeling his words for him or spelling out the choices. It’s a real conversation, a victory out of proportion to the actual words.
Later:
I kneel on the floor by Damian’s captain’s bed, riffling through the clothing drawer. I pull out a pair of fire engine red shorts, show them to him. I ask, "Do you want to wear the red shorts?" I don’t expect an answer beyond a perfunctory "yes." Instead, he says "Yes! The red shorts are neat."
Still later:
Damian and I are playing with a balloon animal, a bright red thing approximating a cat shape with huge ears and a long snake of a tail. I grab it and run off with it to the bedroom. He shows up moments later and says, "Give me back the kitty cat -- if you like."
I like.
This is a kid who didn’t have any communicative language as recently as February.
Yes. I like very much.
It puts my anxiety in perspective. As Dan said to me when I confided my night fears, we haven’t seen any plateaus. Just progress. Sometimes amazingly fast, sometimes less fast, but rarely slow and never halted. These primitive conversations we had today, with Damian showing real thought and choosing his very own words, were the stuff of dreams and hopes a few short months ago. I have to forget about every other child, every statistic and median, and just look at the child I see in my house, the boy I cuddle in my arms. This one is special. He’s going to make it all the way to achieving his full potential.
It will be so. I will it so.
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copyright 2001 Tamar